Positive Thoughts

I'm really enjoying Paint Shop Pro. I used it years ago when I used to use a particular chat room and make avatars. I know only the basics of how to use it, but I can learn little by little, as I need to do. So, I'm finding positive, inspirational quotes and finding backgrounds that I like and putting the text onto them. The pleasure of getting it to look 'right' or to be Virgo friendly (us Virgo's are real perfectionist when trying to create something) is actually stimulating my mind and helping me relax and focus on the positive words and quotes that I'm using. I work for a while on the TN Awareness Day campaign in whatever way necessary and then spend a little time making my own Inspirational Quote designs. I've also been trying to create other designs that we can use for our TN awareness, to either post on Twitter or Facebook, that will try and capture the attention of people.

It's nice to be able to say I'm enjoying something. It gives me some pleasure to see other people sharing the posts and being able to relate to them. If it benefits other people then it is even better, but the main purpose of what I'm doing is to focus on something, to create a finished post and to share it with other people. If it's all I can achieve for a few hours then it's better than nothing. We all have to feel a sense of achievement, whatever it is and however small.


Be prepared for the fact that I will probably be adding lots of my images for a while!

Each Moment

It still amazes me that pain, discomfort, mood and tolerance can alter within just a moment. I still find this surprises me and catches me off guard. My pain level has already varied several times today, from reasonably manageable to a burning sensation with ice picks being poked into my teeth, eye and ear. Inevitably this affects my mood and brings me down, never really getting the opportunity to recharge. My tolerance is something I watch lately. I see myself able to cope with general conversations and I think 'Yes, I can do this'. Then it alters, it builds up or suddenly there are the burning ice picks and I'm in a completely different place. I don't want to talk, I don't want to do anything, see anyone or even be awake. Today I'm aware that I have to take something to make me sleep. Otherwise I will go crazy, crazier than I already am! Plus, I start to think 'No, I can't do this' which is a very negative place to be.

I try not to talk to anyone about my fears, my health worries, my general concerns about what's going on. I know people worry about me, and I feel like they can't cope with anything else being thrown at them. It is my way of protecting them I think.

The last several months have been a difficult time. I don't need to go into more details about that, I don't want to revisit that over and over again. But I do notice things about myself that feel 'different'.

I need to talk about this with my doctor, though actually getting to the doctors surgery seems to be more difficult than you can imagine. If I'm awake all night, all I want to do is sleep. Then another day has past and we're onto another night of sleeplessness. I'm certain I have some insomnia problems, that aren't all due to pain, but also the things that still haunt me. But then a night can come along where, despite the pain and memories I sleep for a good 6 hours. Everyday might look and feel the same, but to be honest, it couldn't be further than the truth. My world can change in a matter of minutes and my ability to cope alters with it.

I need to do more positive thinking.

The Media

There is something to be said for contacting the media and having them tell your story. I did this to raise awareness, to help other people understand and to educate people who just don't realise what life is like with TN.

I've contacted lots of newspapers, not the TV yet, I'm waiting until we can actually buy the fantastic TN ribbons. It won't be long now...

So I've attached the link (at the side of the page) to my TN story that was released in the local newspaper last week. The actual article has a lot more information, including an interview with my surgeon and facts and statistics about TN, including the different types. I wish the whole article was available to see online.

So much work to do, but it is a very positive place to put my energy and if someone suffering with TN can't help with awareness, education and understanding, nobody can.

Short entry tonight. I think the emotion of last night and the tough day today have caught up with me.

Tomorrows a new day, a new dawn, it's a new life...

Inspiration

The lyrics from the song You're the Inspiration by Chicago keep going through my head today. 'You're the meaning in my life, you're the inspiration. You bring feeling to my life, you're the inspiration. I want to have you near me, I want to have you hear me saying, no one needs you more than I need you'. Yes, I know it's a love song, but at the moment the lyrics are how I feel about Harry. He is the meaning in my life, he is my inspiration for living and I do believe that nobody needs him more than I do.

Where we find purpose, wherever we find the reason to wake up in the morning, whoever keeps us strong enough to push forward each moment of each day, is our inspiration and is certainly the meaning to our lives. It doesn't belittle or dismiss other people in our lives, it doesn't mean we don't love them or feel a desire to push on because of them. But, with Harry, he's a young child, almost 7 and I can't leave him. Even in my darkest place I know I have to keep going so that I'm here for him. Everyday I tell myself that he doesn't need me and in fact, he has another Mummy who will meet any need that I would meet. But I try to reassure myself that my role in his life is unique. I have to convince myself that I am essential to his life.

The truth, certainly as I see or feel it, is he would be OK without me around. I offer no positive role model to him as I always hoped I would. I never leave the house and yet I always believed I would do all kinds of things if I was lucky enough to have a child. I would have been a role model to my child as my own Mum was/is to me. But what we believe we'll do or what we think will happen, can change in a heartbeat. So much hope for the future taken away in a second and nothing I (or anyone else) can do to change it.

I can't help feeling this has gone past the realms of depression. I look, anxiously at my box of medication and just wonder...how easy it would be to end this misery. Then I hear Harry laugh or see his little face and feel the huge amount of love in my heart and then I know, that even in this place, I have only one choice...to keep on hoping.

Outcome ~ to date

The densely numb sensation in my face is something I find hard to explain. The closest I can get is the feeling you get when you've had a local injection at the dentist. Your face feels swollen, you can't feel certain areas of your face and mouth and you feel as though you must look deformed. The mirror tells me my face is moving as it always did, but my mind tells me different (in fact I feel like I could be a ventriloquist)! Sadly the left side of my mouth/tongue/lips are numb which means I bite them really easily. I forever have bites on them and can never tell if food is trapped somewhere around my teeth because I can't feel it. My eye is numb too, I can actually touch my eyeball and feel nothing but I have artificial tear drops to help with lubrication and have to wear glasses if I leave the house. The surrounding area, eyelids, cheek, side of my nose, temple and scalp are the same, as is my chin. Imagine a burn, where the sensation is altered other than the constant burning. No matter how much you run your burn under the cold water, the burning remains the same. Each tiny temperature change does this to my face - both hot and cold - increases that burning sensation and discomfort. It is a painful feeling and reacts to those temperature changes. The cold makes the skin feel tighter, as though I'm wearing a mask that prevents my face from actually moving. The heat causes prickly sensations, which I feel before I realise my face is too close to the fire and burning hot. Any exposure to the varying temperatures outside give me increased pain and it is a pain I've not yet learned to deal with.

With physical pain we have medication, meditation, complementary therapies (crystals, reiki, acupuncture, reflexology etc) and at different times I have tried them all. Yet the burning dense numbness is a completely different pain. It is extreme discomfort which destroys any self esteem you might have. When talking to someone you're forever biting your tongue, stumbling over words and the dryness of the mouth just adds to the embarrassment! I realised very early on that nothing I did, or tried, or used to medicate, altered the numbness and the relevant pain it caused. I couldn't reach for morphine because it made no difference. Massage felt nice on one hand but made me more and more aware of what I couldn't feel when compared to the right side of my face. This has made the situation really hard to deal with.

I'm aware now that this will be a process. I still hope, 10 months on, that some sensation might return to certain areas of my face, but I'm also aware that the longer it carries on, the less chance I have of that happening. I have to try and find a way of living with my 'new' face, but I also have to allow myself time to process the outcome of the surgery and the extra problems it has caused.

The TN (I can't be sure if it's the typical or atypical TN pain) is still there. I know this because THAT particular pain feels familiar and does, to a degree, respond to the usual pain relieving techniques that I'm used to trying. On the worst days I reach for Oramorph, a very strong opiate that might only slightly mask the pain but causes me to stop caring as much. It also makes me drowsy, which is always a bonus when you're in pain!

As a result of the MVD I continue to have TN pain that is constant although variable, it can resemble raging toothache that covers a large area or a dull ache that occasionally zaps across my cheek. But now I have the pain and discomfort of the numbness. At this moment nothing will ever be the same for me. I will never smile and feel comfortable, never talk and feel relaxed, I can't eat in front of people because I always dribble something and don't realise it, I can't imagine kissing someone and loving every moment because that sensation has gone. I can't breathe through my left nostril because the heavy, dragging sensation feels as though it's pulling it down and blocking it. As yet I haven't found out if that is a result of the MVD or from a wide bore naso-gastric tube that I had while in hospital that may have caused some damage. Either could be causing me problems, but I can't face pursuing that as yet. I've had my left side front teeth looked at as they are causing me some severe pain. The slightest touch with my tongue feels like someone is sticking needles up into those front 3 teeth on the left. I don't know if I've damaged them from constantly trying to pull the intubation tube out while in ITU or if they are responding to the altered sensation. I wonder if they are irritated from my top lip which can feel 'fuzzy' at times or if they are indeed damaged. My dentist did x-ray them but couldn't see any hair line fracture, but when I saw the Maxilofacial doctor he said he could see a crack in my front tooth with his naked eye.

It is hard to know what to believe yet. I don't have the finances to have a front crown and I don't even know if I need one.

Speeding Up or Slowing Down?

I've felt like I couldn't write anything until I was able to talk about my experience in ITU. Of course it's impossible to write everything that happened in every small detail. The whole thing still haunts me and was such a shock. I felt so vulnerable, it has taken a long time for me to be able to write that all down.

I was seen, prior to discharge, by an ITU liaison nurse who talked to me about recovery from ITU. Apparently, they believe that for every day spent in ITU it adds a month onto your recovery time. That is in addition to the 'natural' recovery process from the MVD surgery. Whilst I haven't written those time scales on the calendar, the 12 days in ITU would imply an additional 12 months to my recovery. My surgeon believes that in my case I wouldn't expect to feel fully recovered from my MVD for approximately 18 months. So, if my mathematics don't fail me, I'm looking at a rough time frame of 2.5 years! Perhaps, with that in mind, 10 months post-op isn't the time to start panicking.

Consequently I had no idea how my recovery would go, everyone is an individual and I had nothing to compare my recovery too. When I left the hospital I was determined to walk slighter further each day, expanding my lungs and increasing my physical ability. I was also very restricted with what I could eat. The left side of my mouth was still numb and my ability to swallow was compromised. Therefore I was only allowed a soft diet and could only manage to eat small amounts. I was instructed to eat full fat foods and drink full fat milk, something I never thought I would be told to do! The wound on my throat from the trachy seemed to take forever to heal and I was scared because they don't put any sutures in, apparently it heals by natural suction. I had the MVD wound, which still hadn't quite healed and other wounds from different lines and tubes and I was black and blue with bruises. BUT I WAS HOME!!

For a long time I couldn't sleep with the door closed, I felt trapped and as though I wouldn't be heard if I called for help. It sounds crazy now, but looking back I realise I wasn't only recovering physically, there were huge emotional wounds that were going to take a bit longer.

For those who live in the UK you might remember that April, May, June 2012 were very wet. It rained and rained and literally didn't stop. This happened at a crucial time in my recovery, purely because I found it impossible to motivate myself to go for a walk in the rain. Short walks around the garden weren't building up my physical ability and somehow instead of increasing my strength I started to slow down more and more.

Intensive Care Unit

I was completely unaware that I would end up in intensive care after my MVD. Of all the possible complications that wasn't one that I'd been informed of. It appears that is because what happened it me is unexplainable. Despite the different specialists meeting to discuss my case, they were unable to identify a possible cause for me to become so unwell 48 hours after my surgery.

I'm told that there was a lot of CSF leaking from my nostrils, I am vaguely away of that much. But I had Sarah take photographs of my wound and I posted them on facebook, sent text messages to friends and was up and about for a while before I became very breathless. I don't remember any of this and I've been told that I probably never will. I have seen the pictures on facebook and I'm still shocked that I posted them!

So, by all account I was walking back and forth to the toilet, but was having to be put on oxygen as soon as I got back to my bed. This situation deteriorated very quickly and an intensive care liaison nurse was called to come and assess me. Her assessment had me sent directly to intensive care, because I had already deteriorated so much, so quickly. I have this vague memory of trying to reassure my Mum that this was just a precaution in case I got worse. She tells me that's true, that I was telling her not to worry.

My next 'memory' was hearing voices and being scared. I believed I was being cared for by a male nurse, who, in conspiracy with another staff member, were trying to kill me. If I needed help, they would pull the curtain round and tilt the bed backwards and cut off my oxygen supply. I felt like I was trying to talk and tell this male nurse to leave me alone and to stop trying to hurt me. I truly believed that I was in danger and there was nobody there to help me.

My next memory was 'seeing' my Mum in another bed. From what I could gather she'd started smoking again and although I don't know what had happened to her, I was aware of her and another patient walking past my bed to go and have a cup of tea and a smoke! I didn't look up to see her, I was so jealous that she was mobile and able to go and have a drink. I was stuck in a bed, attached to multiple machines, including a ventilator, I was unable to speak (although I didn't know why) and this male nurse and his female colleague were trying to hurt me. I remember awful pain in my neck at one point and dreadful pain in my arm, but I believed it was the same pair causing me pain.

I then have some tiny recollection of seeing Sarah and trying to explain to her that I was in danger. But I couldn't talk! I know I scribbled some words on a piece of paper, words that I genuinely thought explained the danger I was in and that I needed Sarah to save me. 

At some point later I could hear more voices and from what I heard the staff were aware that someone had put in a complaint against this male nurse, it was a patient who was currently in intensive care and she was a retired nurse. I heard someone asking the staff to contribute to his collection as he resigned as a result of this complaint and the staff, who obviously had a lot of respect for him, wanted to buy him a really nice farewell gift. I also heard the Matron talking to someone on the phone and explaining that, over 10 years service in intensive care a nurse was entitled to a higher pay out in pension and she was advising him to push for the higher rate due to his many years service. On all account he had resigned from his post as he didn't want to face the complaint and he'd flown off on holiday to Ibiza!

Each time new staff came on duty I would sense their presence at the end of my bed and could hear low voices, though not what was being said. I interpreted this as the staff talking about me as they had worked out it was me who had made the complaint and, as a result, nobody wanted to be responsible for my care. It seemed that the person who had to take care of me each day or night drew the short straw.

ITU is a terrifying place. Not least because you can't move and can't talk, but also because your every single tiny need has to be met by a member of the nursing or medical team. You aren't given a nurse call bell in ITU as there is a nurse sat at the end of your bed 24/7 and there is a machine that will tell them if something is wrong. However, there is no machine that tells someone you need to use a bedpan or that you need to alter your position because your arm has pins and needles. Somehow, without a voice, you have to get your nurses attention for those types of things. I can honestly say, in all my life, I have never felt so vulnerable or scared in my whole life.

Being rolled over, having every part of your body washed, your bedding changed, needles and tubes inserted without being able to explain what you need and having no way of saying 'thank you' when the staff have finished making you clean and comfortable is hard. It is a living nightmare.

I had worked out that I had a tracheotomy and that I was attached to a ventilator. I knew I had a central line stitched into the right side of my neck that went straight to my heart and was being used to give me medication, blood and fluid..I had an arterial line stitched into my wrist which enabled them to test my oxygen levels every hour which was always used at the same time as them taking my temperature. I had a nasal gastric tube which was used for other medication and I was being given feed through it ever night. Other cables and devices were attached to me, though I had no idea what they were and because there were just so many tubes and cables, I found it almost impossible to move!

I have the most amazing memory of being in a garden, with a small gate and being surrounded by the most beautiful, colourful flowers and hearing a voice. Someone was giving me a choice whether I lived or died. I remember saying that there was no way I could leave Harry and that I had to live. From that moment I seemed to be back in a very real state and could understand what people were saying to me. I also remember opening my eyes and Mum being stood over me, holding my hand. I was so, so pleased to see her and she kept kissing me and telling me how special I was. She also told me how unwell I'd been and that I'd been in an induced coma for over a week. Apparently one of my lungs had filled completely and the other was half full and gradually still filling up. I'd been ventilated to try and let my body rest and start to heal. In that time I'd had a total blood transfusion, several different antibiotics as I had an unidentified infection, I was catheterised, had tubes and lines put in and I'd even had my monthly period without knowing!

Getting off the ventilator was a slow process. Despite my determination to breathe each time they reduced the level of assistance I was getting, it is impossible to make your body do something it is unable to do! On a few occasions I'd had the level of ventilation reduced, fallen asleep, only to find it had been put back up while I was sleeping because my oxygen levels had fallen. I was so frustrated when this happened, but just kept telling myself to breathe and expand my lungs as much as I could.

I kept getting a lot of pains in my stomach and I was convinced it was due to the feed they were giving to me. I was also being given different laxatives and found out that the feed I was on was a fibre rich feed! I knew that the inevitable was going to happen, but had no way of communicating this to anyone. Being incontinent over and over again because I had no control over using a toilet and it was like passing water. To make me even more embarrassed I had to wait until there was another nurse free, so that 2 of them could clean me, change my bedding and hospital gown while all the time making sure my tubes and cables were all secure. Nobody ever complained, even though we all knew that it wouldn't be long before it happened all over again.

Tracheotomy suction is horrendous. You feel some looseness in your chest but there is no way a simple cough can clear it when you have a tracheotomy. In order to cough, I needed a nurse to put a long tube down my trachy so it suctioned whatever I managed to cough. The whole process was something I dreaded. It made my whole body shake as I coughed so hard by the tubing being put down to my lungs and I knew that this would have to happen approximately every hour, or more sometimes. I realised that every time I had mouthcare with the small pink sponges the small amount of water on the sponge would trickle down my throat and was obviously irritating my lungs and always made me need to cough. Together we worked out that if I patted my chest it meant I needed to cough and my nurse would come with the suction tubing and help me cough. I will never forget that feeling and how my whole body reacted to the procedure.

I missed Harry, Sarah, my home, my things, my bed and just being surrounded by my belongings. Harry had drawn me a picture and I had that, along with some photographs stuck up around my bed. I used to lay there looking at him, telling him that Mummy would be coming home soon. However I had no idea how long that would take and I feared it would take months.

Eventually I was needing less and less support from the ventilator. I could feel that my chest was rising and falling when I was breathing and not because the machine was making it do so. I was helped to get out of bed and into a chair, even though it was for a very short time, I was thrilled that I'd managed it.

Once there was talk about removing my tracheotomy I was pushing and pushing for that to happen. By now I had a note pad and a pen and was asking/writing lots of questions and I was desperate to be free from all the tubes and wires. But I was constantly reminded that it wasn't wise to rush and to get there slowly. On the day the tracheotomy was removed I was scared but determined to be OK. Once it was removed and a dressing applied the staff asked me to say something. I just managed to say 'Thank You'! Coincidentally, it was the same day that we'd planned with the staff for Sarah to bring Harry in to see me. Seeing him was amazing, but I was also able to talk, albeit very husky and hoarse. He cried when he had to leave, but it spurred me on to push even harder to get better and to get home!

Later that same day Mum and Pete came in to see me and during their visit I was able to tell them all about the attempts to hurt me, the fact that she'd been in one of the beds and was able to walk and talk and that I had made a complaint and a male nurse had left because of me. I explained that I knew nobody wanted to look after me because of the trouble I'd caused. I was in such a state and it was at this point that I finally cried. One of the ITU Consultants had heard some of what I'd been saying and he came over to tell me that It is a well documented fact that a lot of people suffer with ITU psychosis. People have reported seeing tigers, seeing people and various other things that aren't possible. Although I truly, truly feel that these were my experiences and my memories, the rational mind knows that none of it is true. The day I thought I had written some notes for Sarah so she could make a complaint hadn't happened as I'd remembered. I had tried to write, but I was too unwell and Sarah had been given the piece of paper. I'd tried to write it with a member of staff helping me. I have that piece of paper and it is very difficult to read and I'd only attempted a few words, which meant nothing. There had been no male nurse, I hadn't managed to write down what was happening so a complaint could be made, Mum wasn't a patient in ITU and there certainly wasn't any conspiracy to try and hurt me. What I thought were whispers about me and nurses protesting about taking over my care was simply the nursing staff taking hand over from the previous shift and doing so discretely. 

To this day, these thoughts and 'memories' haunt me and the feeling of being completely vulnerable is one that I will never, ever forget.